Antibiotics Throughout Pregnancy?

I apologize for the lack of recent updates and info. I had a few ups and downs last month, but ultimately crashed for a while. Stabilizing now, and I attribute that to breaking down and hiring full time help around the house. I'm now able to spend lots of time either napping (which greatly eases the neuro pain) or at least lying on the couch while Wyatt and the nanny play, without having to get up and chase him around.

When I last wrote, I had experimented with taking a quick break from antibiotics. I was surprised to find that I didn't feel as bad when I was off of the Zithromax, and I wondered if I was feeling so crummy because of too many antibiotics for too long.

As a quick side note, I went back to my original LLMD, as I felt I needed more of a scientific approach than the new doc could offer. (Garlic and meditation are great, but don't bring me any comfort when I'm questioning whether I just had a seizure or if I'm going to croak...)

Anyway, original LLMD helped shed some light on my situation, and I think some of what he said might be helpful to those of you questioning whether antibiotics are the right course of action during pregnancy. Here are his thoughts paraphrased:

1.) When a patient is not pregnant, he agrees wholeheartedly that there is a wall that can be hit with antibiotics. Either the body says, "Enough, please!" or you've been undergoing treatment for years with minimal results, no matter what you try. Some people feel "toxic" from all of the drugs, and in most cases, he would immediately stop antibiotics for a while to let the body take a rest and balance out a little. It makes sense that the body would need a break after working to hard to kill spirochetes, eliminate them properly, and restore itself.

2.) After admitting to him that I had taken a brief antibiotics vacation, he said it made sense that I'd want to do that, and again, If I wasn't pregnant, he would support that decision and pick up again after I'd cleared out my system for a bit.

3.) There are two reasons for his wanting me to stick with the Zithromax:

a.) Pregnancy is not a time to aggressively treat or blast away at spirochetes, but you want to take just enough to maintain your current level of "health" and protect the baby. Protecting the baby is number one when considering antibiotics treatment. Assuming there are no signs of fetal distress or issues exclusive to pregnancy, your baby is not feeling a single bit of the nerve pain (or insert your own bad symptoms here) that you are experiencing. He or she is obliviously floating around and developing in a nice, cozy swimming pool while you feel like crap and count down the days until pregnancy is over (my words here). As far as overloading your body with hardcore antibiotics, that shouldn't happen at all. When I asked if I should be taking more than 500 mg of Zithromax a day, he said no, let's continue to be conservative.

b.) (*I want you to know that I trust and believe in this doctor fully, and this is what made me go home and take those lovely pink pills:) Years ago, his own grandson contracted Lyme congenitally. In the first few weeks of the baby's life, my doctor pointed out to his son that he believed the baby was showing signs of Lyme. The son blew him off, arguing that because his dad was a Lyme doctor, he was obsessed and paranoid and Lyme was all he could see in anyone. The son didn't believe the baby had Lyme. Within three months, the baby was taken to Dr. J in New Haven and tested positive for Lyme. The baby turned out okay, but had to be on antibiotics for a year. Mom hadn't taken her antibiotics during pregnancy.

Normally, I'd be skeptical of a story that reads like an over-the-top cautionary tale, but again, this is a very reputable doctor, he has no hidden agenda and doesn't gain a thing from keeping me on antibiotics, and also, he was serious as a heart attack when he told the story. His conclusion: You can stop taking the Zithromax for the rest of the pregnancy if you want to feel better, but I have a feeling you're going to beat yourself up and feel a lot worse if you end up having to treat an infant for Lyme because you slacked off during the last month. Can't argue that.

And after all that occurred, we found out some interesting information: My Lyme is actually in remission. (I'd heard that from the other doctor I was seeing, but wasn't sure I believed him.) Tests for Bartonella, however, show that I have a raging active infection. Looking at a picture of my blood and seeing tiny little "bugs" scattered throughout it was slightly comforting (weird, I know) because at least there's a visible reason for all of this recent pain. Prior to pregnancy, I hadn't really tackled the Bart very hard, because the Lyme was worse at the time.

Zithromax is not the very best drug for Bartonella, but it is an effective one, which could explain my feeling worse on Zithromax-- it's working, and there's die-off.

My first question was, "Am I going to pass this on to the baby?!" The doctor said that he doesn't believe Bartonella is as easily transmitted (if at all) as Lyme. He gave me a long reason for it that described the differences in how the bacteria travel through the body and where it's stored, but honestly, it went over my head and I forget the parts that made sense. Bottom line is that Bartonella transmission is low on the list of things to worry about in terms of congenital transmission, and in theory, even if it were a problem, antibiotics will protect the baby the same way he or she is protected from Lyme.

I know this is a lot for one entry, but I figured I owed you all an update and some new info.

As of now, I am confident that staying on the Zithromax is the best option for me, even though I'm not feeling so great. I want to keep the Bart in check as much as I can. After I deliver, I plan to start a brief course of Levaquin (which is good for Bart and has helped me in the past) followed by a longer course of Minocycline, maybe both together. We'll see where we go and what to add from there. In the meantime, I'm in the horizontal position as much as possible for the next 7 weeks until I meet my little guy!

Feeling exhausted and basically useless around the house, but finally more optimistic now that I have some answers and a plan of attack for the future.

Anyone out there have any Bartonella experiences they'd like to share?

Growth Scans and Non Stress Tests

We're coming up on thirty weeks now! We grow more excited to meet this little guy every day!

Everything has checked out fine during my regularly scheduled OBGYN visits, but since this pregnancy is considered high risk, we're starting some new tests that will be done every couple of weeks for the remainder of the pregnancy.

Some doctors will suggest that you have these tests, just to stay on the safe side. My insurance covers them, so I say, bring them on!

The first test is simple. It's a fetal growth scan, and it's exactly how it sounds. They do a quick (literally five minutes, much to our disappointment) ultrasound scan to measure the baby's weight. We had our first scan today and learned Wyatt is nearly four pounds! It's amazing how much different a baby looks at thirty weeks as opposed to the earlier"extraterrestrial" versions. Don't get me wrong, ultrasounds can be quite otherworldly (to put it nicely) at all stages of pregnancy... as you can see from the photo above (a front view of Wyatt's face) they still look like aliens in the third trimester. Now they're bigger, lovable little aliens that make your heart melt.

The second test is a called a non stress test. Non and stress are the key words. It's easy and won't hurt you or the baby at all. They put a belt monitor on your belly to measure the baby's heart rate and to measure if there are any contractions happening in there. They record for twenty to thirty minutes any fluctuations in movement and heart rate. They also stimulate the baby by putting a buzzer against your belly to get him or her moving, especially if the baby is sleeping. Again, much like charting growth, the purpose of this test is to make sure the baby is on track and reacting like it's supposed to.

Chances are, if the little one is in the proper growth range and is reacting normally to outside stimuli, all is well in babytown.

You doctor might skip these tests all together (depending how concerned he or she is with the Lyme). I think I'm due for 2 more growth scans before delivery, and I will go in for the non stress test every two weeks.

Personally, though I know all is well based on intuition and the fact that this kid already has a black belt in karate (he kicks like you would not believe!), I enjoy the bonding time with the little one--getting to see him and track his movements. I also appreciate that my doctor is extra cautious rather than passive. I've had enough unconcerned doctors to last a lifetime, and this change is a breath of fresh air.

Expanding Your Support System

I've been debating whether this is a subject worth discussing, as it's more personal than usual, and I'm still coming to terms with this difficult decision I had to make. Ultimately, I think it's important to put my fears and pride aside and open some new doors here. I hope that if you are really struggling with your illness and its effects on your pregnancy, you will consider reaching out for help. I am so happy that I did. So here we go...

Shrinks.

I've had a love/hate relationship with them over the past fourteen years. I haven't seen one in over six, and that is solely due to my frustration and anger over being passed off and labeled as a "crazy" when doctors couldn't find the cause of my illness. I'd see doctors. They would run tests that would undoubtedly be negative for all bad stuff. They would look at my charts and see that I'd been on antidepressants for depression (caused by feeling sick all the time). They'd send me back to my psychiatrist, stating that I was so ill in the head that it was affecting my physical health. Psychiatrists would insist I had a legitimate physical condition, but doped me up on mood stabilizers anyway. I'd see another doctor. Wash, rinse, repeat.

It got to the point where I hated (with every part of my being) the medical system, the physical doctors, the head doctors, and everything in between. (I mean, how do you begin spilling your guts to someone who has been the main source of your trust issues to begin with? And don't get me started on the idiot GPs I've encountered...)

And then my husband spoke out a few weeks ago. Never one to get bent out of shape about anything, he stated, "The quick decline in your overall mental health is terrifying to me. Your mood swings are so intense, you are down more than you are up, and you seem to have lost the drive to beat this."

I couldn't argue. I did, however, break down in tears, a common occurrence these days. But he's absolutely right. What's kept me going strong for so long is that, until the pregnancy, I've maintained a positive, proactive approach toward kicking Lyme Disease. I strongly believe that if we victimize ourselves, that stress and sadness will prevent us from completely healing. I'm also stubborn as hell by nature, and there's no way I'll let microscopic organisms ruin my life.

So why is this darkness creeping up around me? Hormones? Sure. Added pressure of protecting a fetus? Definitely. Feeling robbed of the "typical" motherhood experience? You'd better believe it! My list goes on, but that's not what's important. I'm sure you have a similar mental catalog of all things unfair, uncomfortable, and unfamiliar.

And let's face it: this is all really hard! Even if you're the most positive person in the galaxy, there will be times when you have those "woe is me" moments. That's probably healthy sometimes. We need to address our sadness, and I truly believe we need some time to mourn the loss of our old selves and learn how to get along in our "revised" bodies, which will eventually help us transition into a healthier future.

I know we are all in different stages of our recovery, and we have experienced this disease to varying degrees, but one thing we have in common is that we know how it feels to be in constant pain. We know how it feels to be isolated and misunderstood at times. Some of us have supportive families and friends, while others have suffered some serious neglect. What it comes down to is that all this sure as hell takes its toll.

To be honest, I probably wouldn't have stepped foot in a therapist's office today if my husband hadn't recognized I that need help. (I guess I wasn't s stoic as I thought I was--or I'm seriously driving him nuts!)

Sometimes, even though we know we are in trouble, it takes someone else to say, "Hey, you're going through a lot here, and as much as I am here to help you get through it, it might be beneficial to bounce ideas off of someone who isn't so emotionally invested."

So, yes, I had my first session only because I love my husband. That's not true. I also went because I love my child, and I want him to be born and placed in the arms of a mother who has done everything she can to ensure a healthy, well adjusted, loving bond.

The funny thing is, my experience today was amazing, and from now on I am going for me! It's liberating to sit there and guiltlessly dump your cares on an unbiased party. Once you're not floundering and pulling ideas out of a hat as to why you're sick and a little screwy in the head, therapy is no longer a terrifying experience.

I'm lucky to say that my therapist understands the mental issues associated with Lyme. She also understands my anger toward doctors just like her--those jerks who let me slip through the cracks of the medical system for so long. And she doesn't blame me. (Where were you a decade ago, lady?!)

Again, it was a much different experience now that I have a diagnosis and was able to say, "Here's where my recent problems come from; Will you please help give me the tools I need to cope with them effectively so I can stop being such a mean, weepy bitch?" Okay, so I didn't add that last part...

We started right away, and though it was uncomfortable digging up some ugly old feelings, it's already helped me gain some perspective.

Regardless of how much of a role your pregnancy hormones are playing, if you're suffering, I urge you to reach out and talk to someone. This goes to anyone with a chronic condition--not just pregnant women. We're not superheroes. We can't carry all this weight all of the time. Lightening the load even a little makes a significant difference.

Good Times for A Change

I swear, it's not my intention to only post about Lyme issues during pregnancy as they pop up (but boy, do they pop up).

Checking in to report that I've had five solid days of feeling physically able, and I am so thankful for this new, unexplained increase in energy. (Woohoo!)

Here's where a magic answer would save a lot of people some time and trouble, but of course, I can't tell you what I'm doing differently, because there isn't anything. I'm not even sure it has anything to do with my actions at all. This disease is weird to say the least, and I could feel like I got hit by a truck at any moment.

That said, I will continue to think positively. My circulation has improved, the numbness and tingling are minimal, and the twitches only happen once or twice at night.
I'm sleeping well, my joints aren't killing me, and the room isn't spinning. I even woke up this morning and did laundry, took out the garbage, did some dishes, and let the dog out to pee. (Don't worry, I know to stop well before I reach my limit.)

My husband took me out yesterday to get a new pair of running shoes. So what if the thought alone of running right now makes me want to curl up in the fetal position? It's inspiration to keep up this good momentum, and I plan on walking for little bits at a time to build up some muscle and get the endorphins going. I figured shoes were a healthier reward than chocolate or an ice cream cone (though far less tasty). If I get wiped out, I get wiped out. Exercise will be waiting for me when I can handle it.

So, if you only get one thing from this post, please know that Lyme pregnancy doesn't have to mean nine solid months of agony (It might be eight and a half months of it, but let's celebrate any good day we can get!) Five good days and I am recharged.

This moment of peace has allowed me to put things in perspective. I keep telling myself, "Okay, a couple more months! That's nothing!" And in the grand scheme of things it isn't anything. Before I know it, this little life will need to be cared for on the outside, and I maintain that if my attitude is positive, no amount of Lyme pain will stop me from being a good, happy, loving mom.

I've said it a million times, Lyme pregnancy is hard, it's scary, and it can make healing seem like an unattainable goal at times, but THIS IS SO WORTH IT! And think of how much sweeter motherhood will be knowing we had to fight so hard for it.

Good luck on this journey, ladies, and enjoy those good days, even if they are few and far between! You can do it!

*Note: A good day allowed me to go outside and take some pictures of the spring blooms (see above). Fresh air is so good for the soul.

Hi, Metabolism, Remember Me?

Nothing overly helpful to report today, though I do feel like I should share this morning's experience because it's a very real, discouraging part of pregnancy for some women.

Who am I kidding? Sometimes I just need to vent.

I had a routine monthly check-up with my OBGYN, and I made the mistake of looking at the scale. When I blurted out "Holy sh**! That can't be right!" the nurse laughed hard and ever-so-kindly reminded me that I still have a long way to go.

Some women are bothered by big scale numbers, and some aren't. All power to you if you're embracing those beautiful pregnancy "curves" people rave about, and if that's the case, no need to read any further today.

This is for the ladies who are concerned with what happens when you're Lyme pregnant, metabolically challenged, craving 10 tons of ice cream, and not able to exercise. (If you had a baby and stayed in shape, which I'm sure happens, you make me ill with envy and I am tempted to sit on you.)

I gained a whopping 33 pounds at only 26 weeks, which resulted in a crying spell in the parking lot after my appointment. I also told my loving (and forgiving) 150 lb, 6'4" husband that he's a lame*, insensitive jerk* for being so thin, and that I can't stand looking at his skinny butt*. (*=censored.)

Though it infuriated me at the time, I'm glad he laughed as my hormones took over. I swear, I used to be a very rational, well balanced person...

As I mentioned a while back, I am one of those people who takes great pride in being fit. I've worked very hard over the years to maintain a toned, "healthy" body. Before Lyme wiped me out completely, I was a long distance runner, and partly due to a billion forms of food intolerance, I was neurotic about only eating the healthiest, organic foods. I strongly believe my commitment to a healthy lifestyle is what prevented my major Lyme "crash" for so long.

I have been 100% inactive since August of 2008, and I now consider a brief walk around the store to be hardcore vigorous exercise. By some miracle, I only gained 10-12 pounds after I stopped moving around. I miss my metabolism greatly, but hey, what can you do? Sadly, any form of exercise leaves me bedridden for days.

Pregnancy weight is there for a purpose, and the little one is obviously first priority. I completely get that and believe in it! My tears come from issues that will arise further down the road, as once I pop this baby out, there's no way I'm going to be able to just go out like a healthy person and "exercise the baby weight off." I'm carrying about 50 extra pounds, and that's a lot to shed (not to mention a literal pain to lug around). Without the hope of being active again soon, I feel like I'm destined to be a slug forever.

I know some people might think this is petty, but honestly, I'm human, and every once in a while I let the fact that my body has failed get the best of me. Do I like being completely sedentary? Heck no! Who wants to lie around and eat all day?! (Wait, don't answer that...)

Typical Lyme symptoms set aside, this has been, by far, the toughest part of pregnancy. It's more than just putting on extra pounds; it's an issue about control over my own body-- I can decide what foods I put into it, but as far as activity goes, Lyme is an evil dictator. I have no control.

It's strange trying to balance the new instinctual need to be a strong, capable mother and going day to day saying, "Man, I just can't swing it today...maybe tomorrow I'll be steady enough to get off the couch."

And this isn't about squeezing into a size four (I swear, I'm not that vain); It's more of a constant reminder of my limitations. Learning to say goodbye to the old Sara and accepting the new, chubbier, slow-moving one is an ongoing and difficult process.

I know I will reach the acceptance stage eventually. Often times, I actually get there. It's just that some days I backslide and want to fight and kick and curse Lyme to hell.

Ultimately, when I'm better, I'm putting my awesome baby in one of those ridiculous jogger strollers I covet, and I'm going to run like my life depends on it!

Let the Fun Begin

I (finally) started IV Rocephin about a week ago. It's amazing how quickly things move along when you have competent doctors.

No serious reactions or side effects, which is always a good thing, though I experienced my first herx a couple of days ago. Compared to what I've experienced in the past, this one was very mild. Mild, meaning a few days in bed with intensified symptoms and a bad case of the twitches. It seems to have subsided some today.

A lot of people treat a herx like it's the end of the world. That's probably because it feels like it's the end of the world. A lot of people also mistake side effects of their meds for a herx reaction. Unfortunately, antibiotics can make anyone feel like they're permanently out of commission, especially when on high doses.

The one thing I can say is that, pregnant or not, herxing or not, you can't let yourself get too discouraged. It also doesn't help to whine about it. I'm not trying to be harsh; I'm just being honest. The more positive you can stay, the better your chances are of healing. Plus, it makes that down time in bed a whole lot easier to tolerate. The discomfort won't last forever! Use this down time to make some peace and give yourself a rest.

I'm not sure if this is purely a coincidence, but I noticed that since I've taken the time to really detox this time around, my reactions aren't as harsh. When I say detox, I mean simple things.

While I appreciate it when people are willing to try unconventional methods of detoxification (i.e. ionic foot baths, sweat suits, strange mixtures/elixirs of kitchen items that don't belong together, excessive supplements) I'm just not in that camp. I do realize that many of our systems are compromised and that detox is difficult, but for me, I feel like a few small steps will go a long way to restore balance in time. Patience is the key word.

I drink at least a gallon of water (with lemon) each day. I've been taking my magnesium, probiotics, thyroid pills, and prenatal vitamins. I make sure I scrub well in the shower. But most importantly, I don't eat crap food. By crap I mean anything packaged, dairy, or bready, even when it's falsely advertised as "natural and healthy."

I eat lean proteins, fruits, and vegetables. For grains I eat brown rice. Some people eat quinoa. (I can finally admit that I don't like the taste, so I say no thanks to that.)

The less our bodies have to work to filter out all of the crap we eat, the more energy it has to filter out the crap that Lyme and Co. leaves behind.

If all else fails, remember, all of this really is temporary.

Dr. DoNothing and the Insurance Nightmare

Still without a PICC line. This is week three of of the waiting process. It's also week one of having no antibiotics in my system. This is not by choice; It's due to the fact that I can't get a single one of my doctors to work together, nor can I even get a call returned.

I have one of the most reputable Lyme Disease doctors in the country, and if I wasn't pregnant right now, I'd fire his ass and start the long, expensive search for another doctor.

My issue is simple: I need antibiotics asap to protect the baby and to continue with my treatment. I call my LLMD to get a refill on my orals, because some drugs are better than no drugs while we we wait for the insurance stuff to clear up. They say they will work on it. Days pass, and there's still no Rx called in. I email the PA in the office, explaining how important it is that I get some meds refilled. I also explain to her that my symptoms have worsened. I'm having trouble maintaining a normal heart rate, which is scary. (My pulse goes from low 80s to 52 bpm within a minute or two, which makes the room spin and my peripheral vision go black. I'm also a neurological mess. What should I do?

I also express my concerns: High risk doctor staff admits that they're unfamiliar with the IV treatment/insurance process. Insurance has already denied two appeals, and now our final hope is to submit an appeal in writing. It will be kind of hard to write the ridiculously detailed and legal savvy letter I need when the person writing it doesn't even have a list of my current symptoms.

Why don't they have that info? Because no one returns my phone calls on either end. The doctors offices are not talking to each other, and I'm sitting around powerless waiting for someone to do something. Keep in mind, I am not being a pushy jerk about this. I am always friendly, but firm and fair. Maybe I should change my tune? After all, I pay both doctors way too much money to have to put in this much work by myself.

In the end, I ask the PA for one thing: Please write an adequate letter for me to submit to the insurance company, because her letters have worked with insurance in the past, and she knows my case more than the new high risk doctor does.

I asked this a week ago. No response. Again, two appeals have been denied since then, and I need her help.

After all that, the PA writes back yesterday (a one-line email): "I will finish a letter for you as soon as I can and contact Dr. ______'s office. Since he is the ordering physician, his staff will have to handle their end."

Wow. Thanks for the detail and for addressing my concerns. PS: She will not give me more antibiotics since high risk doctor is dealing with that stuff now.

So, today I will make my daily call to the high risk doc to deliver the news that LLMD will not supply oral antibiotics, and that it is his responsibility now to call in the drugs I need.

I'll also let them know that there should be a letter from the LLMD coming in that will help with the appeal, but I would like to speak with someone at the office to provide some information and documentation that will help win the appeal. I also want to report my symptoms, because they are getting worse.

And like they tell me every day, the doctor or a nurse will call me back this afternoon to discuss this and give me updates.

Sure they will.

In the meantime, I've priced out the out-of-pocket treatment cost, because I know I'm going to get denied this next appeal (let's face it, that letter's not gonna get there in time), and we can't wait around much longer.

Over $15,000 for 5 months of antibiotics and a once-a-week nurse visit. And the company won't "bill you later." You pay the $650 weekly, or the meds and nurses don't show up.
Believe it or not, I've called a bunch of places, and this is the cheapest, best offer. Well, the only one that does not sound creepy and completely ghetto.

I'm finding it harder and harder to keep a positive attitude about all of this. Pregnancy should be a joyous occasion, and I'm having panic attacks daily.

Things will get better soon right? I'm about out of hope here...